Hello, my name is Lysa. "Lisa w/ a Y"
. In 2003 I was diagnosed w/ a rare genetic liver/ lung disease called Alpha1 Antitrypsin Deficiency.
Since my diagnosis, I have been receiving weekly infusions of a drug called Prolasin C. The medicine is $10k per month, slows the progression of the disease but it is not a cure. In Jan 2015 I went from not being sick enough for transplant at 24% lung function to "Oh my gosh I hope I don't die!" I had to quit working and I will need a double lung transplant to stay alive. I have been on the transplant waiting list since 6/11/16 and my current lung function is around 16%. I am still waiting for "the call". Without your support- transplant is not be an option
. Every donation, prayer, phone call, etc is necessary for me to not just survive this ordeal but THRIVE despite all of the obstacles.
It has NOT been easy but my motto is always:"That which doesn't kill me makes me FIGHT harder". and in the words of Bruce Lee~ "Don't pray for an easy life, pray for the strength to endure a difficult one"
Please click the link below to read more about me, besides my failing lungs. MY STORY.. What's The Dilley-O, published by Coffee House Writers LLC
Shout out to Marshawn Lynch for allowing me to use the words "BeastMode" and represent an extreme example of a BeastMode24/7 lifestyle.
Hope to meet you someday to thank you in person. Lysa
People ask me all the time, what is it like to live with this disease ? This video says it all!